Perspectives on Data Sharing in Persons With Spinal Cord Injury

Neurotrauma Reports, 2023 · DOI: 10.1089/neur.2023.0035 · Published: January 1, 2023

Spinal Cord Injury Patient Experience Healthcare

Simple Explanation

This study explores the viewpoints of individuals with spinal cord injuries (SCI) regarding the sharing of their research data. It investigates their opinions on the potential risks and benefits of data sharing, and identifies the types of data they are most comfortable sharing. The research found that most participants believe the advantages of sharing data outweigh the disadvantages. However, concerns were raised about data security and potential misuse by companies. The study suggests that clinical trials should include information about open data sharing in their consent forms. This would better acknowledge the contributions of research participants in future studies.

Study Duration

July 2020 to August 2021

Participants

232 persons with spinal cord injuries

Evidence Level

Not specified

Key Findings

1
The majority of participants felt that the benefits of data sharing outweighed the negatives.
2
Participants expressed most trust in persons living with SCIs, doctors, and scientists as data-sharing partners.
3
Concerns about sharing data were proportionate to the sensitivity of the data, with sexual dysfunction, bladder/bowel concerns, and respiratory problems raising the most discomfort.

Research Summary

This study investigated the perspectives of persons with spinal cord injury (SCI) on data sharing, including perceived risks and benefits, and willingness to share different types of data. The study found that most participants supported data sharing, believing that the benefits outweighed the risks, but they had concerns about data security and misuse. The findings suggest the need for clear communication and respectful consent processes in clinical trials regarding data sharing to address participant concerns and promote open science.

Practical Implications

Informed Consent

Clinical trials should include a statement on open data sharing in informed consents.

Data Security

Address concerns about data security and potential misuse by companies.

Respectful Practices

Researchers should request permission to share data to demonstrate respect toward research participants.

Study Limitations

1
The majority of participants identified as white and were almost all English speakers.
2
The majority had chronic traumatic SCI, which could affect the generalizability of the findings.
3
Findings may not be applicable outside of the United States/Canada, and may not be applicable to developing countries.

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